I Was One of the Scary Kids

Content note: ableism, stigmatization of Autistics and other PWDs, the Sandy Hook shooting

I didn’t want to write about the shootings at all. I knew a number of people (who I’ll link to throughout this post) and organizations would be posting and writing, working to counter the inevitable stigma fail that would happen. I even was keeping to commenting on the links of people I care about, people who I know and who I want to have these sorts of discussions with. Then, it happened. I’ll leave the critiques of the post gawker promoted to others, but I feel obligated to make a comment about some of the assumptions it is based on and promotes.

That comment starts with a declaration: I was one of those scary kids.

It’s not some great proud thing to say. It’s a truth, a truth that when I reveal it makes people behave differently. Admitting that you were a “scary kid” means that people heighten their bar of behavior for you even more than a simple disability disclosure does. It makes even normal responses to threatening situations take on a sinister light to others. Telling someone to back off goes from angry to a threat. Pushing away someone who feels entitled to your body becomes violence rather than defense from it.

It makes people suspicious. It makes people question your ability to accurately report crime, abuse, or health concerns. When you are a former scary kid and let people know, they don’t want to hire you in meaningful positions — or sometimes at all — they don’t want you living in their buildings, and they don’t want you learning at their schools. Your opportunities are curtailed. You are told all the things you will never do.

All of these are true of having certain disabilities to begin with, but when you add in a confession of having been one of those scary kids it is heightened.

I was a scary kid. It makes me sad, but only because I actually don’t like scaring people, though I often can’t tell.

Before the age of 14, I was the sort of child that service providers recommend parents to place in a residential setting — that is, juvenile mental health institutions. Parents were — and are sometimes still — encouraged to relinquish them to the state, who would willingly pay for this kind of care. My mother fought it, and demanded community based services and the training my providers needed to provide it. But she was pressured the entire time, and when I was reviewing her records last year I found boxes of pamphlets and packets that she was given to encourage my placement in those settings.

I also found her private journals about our lives at that time. These were journals she might only ever show excerpts from to a therapist, but were meant to be private accounts. It was scary for her. I cried when I read them, because it was horrible to realize that I had made my mother feel so horrible and hadn’t known. I had not realized that anyone would have interpreted my behavior in a truly scary way, that they wouldn’t see the same causes that I was reacting to.  But she was terrified in those pages — the ones she never meant for anyone but herself to read. Even in her advocacy work, she wouldn’t say that certain events were from my life, just that they had happened to “a young person” she knows. Even the things that she was terrified about.

In the pages of that private journal, she talks about the times I would charge at or by her. To me, I was desperately trying to escape a scary situation for me. To her, it was a charging at. I would throw things, and at the time didn’t have the impulse control to find soft things in a safe space. I never aimed at people, but to her I just had really bad aim. I screamed, and I said things that made little sense — I was scared and angry and frustrated that I couldn’t articulate it. These were seen as threats. When I was put in a scary situation, I would flail and push to try to get out of it — and these were seen as violence. When she left on trips, I was taken with her because she was worried what would happen if I was left with a babysitter.

Most of the episodes she chronicled for her private memory keeping were ones that she never saw the cause for. So many start with, “I came home from work, and Savannah…” It took me until into my twenties to be able to articulate what happened before — that her second husband had provoked responses and behaviors. How he would tell me I was fat, lazy, and that I would never be competent. How he would threaten me with sending me away.  How he did any one of a number of things that would set off my behaviors. There’s no coincidence that the behaviors dramatically decreased a year after he left- at 14, I even was off medication.

Not all the behaviors were triggered by him — some of them were reactions that I didn’t know how to handle internally. Some of them were because of how my internal state from incorrect prescriptions made things harder to deal with. Some of them were from being unable to handle fear, frustration, and change internally. Change was a big trigger for me, and set off the start of my fear responses. I just didn’t have the skills to handle those states. I would go on to develop them, but I didn’t have them yet.

For me, those times were scary because of the outside world, because of confusion at people’s responses, and because of people using my being a “scary kid” as a weapon. To her, I was scary and she didn’t know and couldn’t predict fully why. She understands it now — time, observation of me growing up and learning, my finally being able to properly articulate what was happening for me in those times.

My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at  a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions.

Having been one of those scary kids is scary.

It’s not scary in and of itself. What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose.

I’ve had people try to justify things from the JRC’s electric shocks to denying someone an integrated learning environment, to defend seclusion/restraint to “therapy” induced injuries and even deaths using my fellow former scary kids as their reasons. The kids with “significant disabilities.” The ways that other people saw my behaviors — things I didn’t know at the time- are the same things I hear from people trying to justify violence and isolation towards kids and adults with disabilities.

They also project forward to futures that are inaccurate, contributing to the problems that us scary kids face when we grow up. They say we will become criminals, or will commit violent crime, that we will be a danger to society. That we are “sleeper agents” of mass murder. They say that of course people who have had such and such a diagnosis, especially when you are also a scary kid, will do certain things or will never do other things. That we couldn’t successfully ever live on our own, that we’ll never graduate, never hold a job for long, will never have successful, healthy relationships. That we are doomed. And while not all scary kids have mental health disabilities (and not all kids with MHDs are scary kids), those who have developmental disorders with the right behaviors are lumped in.

When I- and others who are autistic, have Mental Health Disabilities, or both — talk back with truth, we are denied. When we talk about how having xyz diagnosis doesn’t mean we will do stuff, when we point out that we aren’t mass murderers, we are shut down. When we talk about how yes, mental health reform is important but that it shouldn’t come out of stigma, coercion  and false equivalence, we are told that we are calling other scary kids lost causes. When we point out that we don’t have enough information, we are dismissed. When we disclose, we are called too close to the issue. Even when our mothers join us.

In reality, only 5% — or 1 in 20 — of those in jail for violent offenses entered jail with a diagnosable condition. The other 95% did not present as diagnosable on entry. Most of those with diagnosable conditions are there on non-violent and drug offenses, including a number of which are a symptom of a lack of supports rather than their conditions themselves. Some estimates place the rate of Mental Illness at 50% of the inmate population, and yet only a very small percentage are there for violent crimes.

In reality, these impressions of us make us targets of crimes. People with “Serious Mental Illnesses” are more than twice as likely to be a victim of a violent crime. We are targeted for sexual assault, particularly if we are or are seen as women. We are likely to feel stuck in abusive relationships, or to have people use our diagnostic status as justification for abuse. And that is just the violent crimes  — we are astronomically more likely to be victims of personal theft, and 4 times more likely to be victims of property theft.

In reality, the stigma and stereotypes that people are promoting mean discrimination in employment, in housing, even in healthcare and courts. It means having people turning their backs on friendships and relationships when they find out, even if you are relatively stable now, even if you have the supports that make it irrelevant. It means people leaving if you have a setback that they would stand by someone without your diagnostic history for.

It is facing stigma, or hiding from it, sometimes at great cost. I certainly made a lot of poor choices based on trying to hide having been a scary kid, even when I wasn’t hiding having Mental Health Disabilities.

Being a Scary Kid isn’t certain doom.

They told my mother and I that I would never graduate high school and I’d never get into college. Some speculated I’d need to live in a group home or a more intense, and that I’d never live on my own. Some thought I’d get sucked into crime based on my psych history alone. Some said I’d off myself before I turned 18, 21, or 25.

I graduated high school — my siblings, the non-scary kids, dropped out and either have or are working on their GEDs. I even aced a number of classes, and other than my last semester (which was sucked up in depression) was pretty much tops. I’ve had some unsuccessful attempts to live on my own in the past, but those had to do with daily living skills more than being scary. Right now I’m living relatively successfully on my own, even if it did follow a period of homelessness. I did get into college easily, even if I had to drop out for a mix of financial and ADL deficit reasons. I’ve never been in jail.

I celebrated my 25th birthday in August. I am alive, and though my health isn’t the best I am surviving and working towards my own personal wellness.

I have little in common with the things they assumed. My scary is now just the normal stigma that any of us, autistic, with mental health disabilities, or both, face. I do struggle, but not in the ways that were assumed when I was a scary kid.

Being a scary kid is just that — having behaviors that scare people when you are a kid. It doesn’t mean you have a particular diagnosis or neurotype. It isn’t predictive of being a mass murderer or anything else- heck, a lot of the people who are mass murderers, diagnosed with something or not, didn’t reach the heights of being “scary kids” when they were younger. Not scary the way I was, or others were.

When I point out to try not to link scary kids to criminal violence, particularly of the mass murder sort, I’m not saying that services and supports aren’t needed. I’m saying that they would be even if we never had a massive violent event. I’m saying none of us are doomed, if only we combat stigma and prejudice at every chance, be it ableism, racism, or classism that we are talking about.

When I tell you no, I mean that none of us are lost causes.

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Quiet No More- The Loud Hands Project

“Remember, you weren’t the one / who made you ashamed, / but you are the one / who can make you proud.”  – Laura Hershey, You Get Proud By Practicing

I think a lot of the people who read my blog are also people who have read Quiet Hands by Julia Bascom. (I actually already linked to it in my own Rocking (and Flapping) at a 1000 Revolutions a Minute.) If you haven’t yet, please go do so either now or after you’ve finished reading this post. Julia got a massive response, as Quiet Hands went viral. It became very obvious that it was describing an experience that a lot of us have either experienced or have observed, sometimes unaware of the emotional and communicative consequences.

One of the devastating effects of the phenomena that Quiet Hands describes is how it silences Autistic communication. For many of us- and particularly those of us with verbal communication difficulties- our hands are our primary communicative tool1. We stim with our hands, we supplement our language with gestures and pantomime, we use languages like ASL with our hands, we type with our hands, and even utilize AAC devices with them. Things we do with our hands is how we connect with one another- even if that community building isn’t recognized by others. So when our hands are stilled, we are silenced and isolated.

What, with this context, does having “Loud Hands” mean? Obviously it would have to embody the opposite of- and possibly counter to- the silencing described above.

The Loud Hands Project (which is being run as a project of ASAN) demonstrates a pretty good idea of what it could mean to have Loud Hands. The project description defines Loud Hands as “autism acceptance, neurodiversity, Autistic pride, community, and culture, disability rights and resistance, and resilience.” Essentially, efforts that work counter to the silencing and discrediting that comes with a culture that denies Autistics the ability to communicate in ways that are natural to us.

The Loud Hands Project (LHP) is planning on being a transmedia project, spearheaded by Julia Bascom. The current focus is on putting together a written anthology that will serve basically as a foundation document. Submission guidelines/call for submissions for the written anthology went live on January 8th. They include a number of prompts on what it means to be Autistic and aspects of Autistic culture, but they welcome submissions that aren’t answering the prompts while still reflecting “questions about neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively as having loud hands.)”

From there, the plan is to focus on multiple mediums as a way of documenting and curating Autistic culture and community, particularly as related to the afore mentioned concept of what Loud Hands means. And I do mean curating- one of the stated goals is to collect and store some of the founding documents of the Autistic community.

Another major direction is looking to be video projects, starting with the trailer (more on that in a moment). I’ve noticed a lot of brain storming for future videos for the LHP media collection, but the actual non-written media submissions aren’t open yet. (Opening of those submissions is still to be determined.) They are welcoming your ideas/brainstorming for future non-written submissions though! Eventually I believe that they will join the trailer on the Loud Hands Project Youtube channel.

Fundraising efforts- LHP is using indiegogo– were launched December 26th with the video below. (You can read a visual transcription/description on tumblr or at the youtube page itself.)

In the first 24 hours, the indiegogo campaign raised over $3000- and over $6000 at the end of the first week. As of 9:30pm January 10th (when I’m composing this entry) it hit $7463 USD. Fundraising ends March 15th with a goal of $10000 USD. UPDATE:  January 14th the $10000 goal was met. They are still collecting funds though- see the bottom of this post for more on this!

You can see the support levels, along with the number of people contributing at each level, at the LHP indiegogo page. Each support level has a different corresponding “reward” for your donation, ranging from a thank you email, to PDF pre-releases of the anthology, to signed hard copies donated to libraries in your name.

I personally feel that it is a much needed project, and am totally excited about it. As such, I’ve been trying to contribute in any way I can to this effort. I wrote the Visual Transcription mentioned above, as well as designing the Blog Badges (shown below) and writing most of the how to on using them.

Blog Badge- large. A large white person is holding a sign up that says "The Loud Hands Project". Below this image, text reads "The Loud Hands Project" and "Autistic People, Speaking". Below that it reads "Watch the Video. Read About the Project. Support the Work. Visit indiegogo for more about The Loud Hands Project."

The large blog badge, which I'm using in my own side bar; 170x300 pixels

Blog Badge- Small. A large white person is holding a sign up that says "The Loud Hands Project". Below this image, text reads "The Loud Hands Project" and "Autistic People, Speaking"

A smaller Blog Badge; 170x193 pixels

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I’m also (obviously) writing this blog post, and sharing it in my networks. Right now, LHP is on Twitter as @loud_hands and there’s a Loud Hands Project facebook page as well. (If you clicked through on my original link, you’ll notice that the Loud Hands Project is on tumblr as well.)

I think another interesting feature of the campaign is how various accessibility measures have been added.

The visual transcript for the trailer was requested before the campaign went live, which is kind of a big deal- while captions are becoming more popular, visual transcriptions are not as common. After all, they are time consuming to create- more so than image descriptions- and like image descriptions can be hard for people with visual processing issues to write. But they can be a big deal for visually based messages becoming accessible for the Blind, visually impaired individuals, and those with visual processing issues.

Additionally, there has been a recognition that language processing difficulties can be a barrier in sharing stuff like this. Two days after the campaign went live, scripts for sharing LHP‘s campaign went live.

This isn’t as uncommon to be accommodated, though outright recognition that it is an accommodation is, I think, less common. More often scripts get framed as “We recognize you are a Busy Professional Person™ who doesn’t always have time to handcraft sharing emails, so here’s an example you can use!” It has become something that, when present, isn’t seen as an accommodation, which would be great if it wasn’t for the resistance that those who do need this particular thing usually get when they have to ask for it. I think that in this context, the fact that the scripts are openly recognized as having an access function as well as being given in an overwhelmingly supportive manner in response to requests is significant.

And, of course, the blog badges have image descriptions and I’m going off to caption the lyrics to the song in the trailer via Universal Subtitles tonight. (Which means they’ll be up by the time this post goes live.)

I hope you’ll join me in supporting the Loud Hands Project. I hope you’ll link it, share it, tweet it, blog it, and post it. I hope, for those who have the money for even the lowest level of support ($10) , that you’ll donate. That you’ll encourage others to donate. And, once the fundraising campaign is over, that you’ll continue to support the projects of the Loud Hands Project.

I believe that we all should have Loud Hands, and that LHP is a great way to facilitate that. Not everyone is in a position where they can go and be safe stimming in public, or writing long blog posts, or have the supports to do speeches or attend protests or go to conferences like Autreat.  But it is possible for some of us to do some of the little things- making a video or a painting, answering a mini-prompt, constructing things in our own natural languages that say, “I am here. I exist. I can be proud.” These are the core of what it means to have Loud Hands.

The big things are great. But sometimes it’s the little ones together that end up being the loudest.

1 I recognize that some of us also have mobility difficulties that make using hands in particular not something that is doable. If you can think figuratively, hands is a stand in for all the other non-verbal techniques that people use to accomplish the things we are talking about. Our hands here are not just literally our hands, but our own means of communicating. The same goes for words like “voice” and “speaking”.

UPDATE (January 16th, 2012): On January 14th The Loud Hands Project met their $10000 USD goal. That’s right, in 19 days you- the supporters- met a goal that was planned to take 80 days. Great Job!

Seeing how much our community needs LHP, and with encouragement from indiegogo, LHP is going to continue fundraising through the original March 15th deadline with benchmark goals at $15,000, $20,000, and $25,000. You can read the details on the projects at the Loud Hands Project blog, but they include more videos, more documenting of our community, more supporting Autistics pursuing community, and the launch of the website and all of the resources that will bring.

It’s exciting- exciting because we need it, and exciting because it means that we won’t have to wait for the anthology to be a success before LHP will be able to start bringing more projects to us.

Rocking (and Flapping) at a 1000 Revolutions a Minute

[Content warning: Mentions of Ableism; Censored use of the r-word; Abusive Treatment]

I made it down to an occupy site!

I am in the DC area this week for a variety of things. So Tuesday afternoon I went down to the site at McPherson Square for a couple of hours. It was significant for me in part because although I’ve been really active with work groups at Occupy Pittsburgh, and been doing a lot of Occupy disability work, I’ve yet to make it down to any physical site. (Mainly it is an intersection of disablity and transport issues.) So it was exciting.

I stayed for a while, but I ended up leaving 10-15 minutes earlier than I had intended. Turns out the people in the tent behind the sidewalk where I had plopped down were Ron Paul supporters, and they got their supplies out and what not. I decided I’d rather not have my disabled self be used to create support for someone whose policy platforms tend to be counter to the needs of people with disabilities.

I made a youtube video of a portion of my time on site. (And yes, it is captioned, thanks to Universal Subtitles.)

The reason this is getting its’ own post and not getting lumped in comes from a comment on this I got from Urocyon on Google plus. She commented about how even thought stimming makes her feel like she’s releasing tension from trying not to, it is uncomfortable for her as an adult to stim in public.

I responded with-

 I think that those feelings is what makes rocking or flapping in public so… well, revolutionary and powerful. Because we’ve had those thoughts that it’s bad or wrong or something to hide ground into us to the point where we doubt ourselves and our right to exist as we are in public spaces…

Rocking and flapping and spinning and humming and pacing and racing and- well, and stimming some how becomes a challenge to those things we’ve internalized about our rights to live as we are. It is somehow this reclaiming of some part of us that we love but that we were told is wrong.

We have been told that these basic steps of self care- and that often is what it ends up being in a way- are wrong. Quiet Hands and You look like /are acting like a R[-word] and people will think you are crazy and countless other stories, these are the things we were told from a young age about how we are bad and wrong. We are trained fiercely to assimilate into a world that doesn’t want us, but other people in the warm bodies we inhabit and strangers they can love to move in behind our faces.

The week before I sat in the park and rocked, feeling my defiance, I spent several nights wishing I didn’t exist. I knew all the things I talk about here intellectually, but that base part of me is still filled with the remembered abuse of my past. The most prevalent are those that were excused at the time as treatment while speaking words describing me as a burden and my being as a barrier.

So, in the face of stress, the only answer that came to me is that I should not exist. I sat rocking and blubbering the late nights away while my sister was sleeping fighting those things from my past that still live in my head. This time I won, but today I saw a friend who was saying of herself the same things- I should not exist. This is a friend who is passionate about her rights as a person with disabilities (among other things), and still the thought- I should not exist.

When the things that make up a part of who we are is so suppressed, how can it not be revolutionary to rock in public? How could I not include this part of myself when protesting a system that treats people without economic means as worthless? Why shouldn’t I stim in the face of a world- one both outside and inside- that tells me that I, too, am worthless? (If you are new, I am indeed fond of rhetorical questions.)

I am stimming 1000 revolutions a minute when I go out and stim at a protest. I’m being Autistic, fat, disabled, queer, poor, covering, and many other things in public when I am in public, and being visible here is bringing all of those things out and into a space where revolution can happen. I am speeding our revolutions while joining their revolutions, even if it is only that tiny amount that visibility brings.

But revolution can happen in places that aren’t big protest sites too. Protest can happen even when you are alone, the only person to see it yourself and the only mind it will change is that part of you that believes what we’ve been taught. That is revolution at the most basic element- being able to change our own minds to make a more equitable world.

So yes, I rock (and flap, and…) 1000 revolutions a minute. We all do, when we dare to be who we are without apology, and dare to confront that which tells us we shouldn’t exist or aren’t worthy. We do when we dare to exist freely as people with disabilities, as Autistics, as all of the things we are.

We are a 1000 revolutions a minute.

Republished at Persephone Magazine November 28th 2011.

Why I’m not Blue.

I see a lot of “light it up blue” stuff being posted around the net today. It makes me sad, really. See, The light it up blue campaign is a project of Autism Speaks. Their name is Ironic, considering they do not have any Autistics on their board, and one Autistic on ONE advisory committee.

I am an Autistic Adult. I have an Asperger’s Dx. But any time I say this, people say things like “Oh, but you can’t be, you talk!” or “But you have so much to say!” This is particularly a prevalent response online, where I do communicate better. I sometimes hear it from people whose only experience around me is hearing me give a talk, not cognizant that there’s a huge difference between public speaking and reciprocal communication.

If they stay around long enough, though, and they know what Autism actually *is,* they get it.

Thing is it’s pretty rare for people to actually get what it is. They are given imagery and little information. Puzzle pieces, Statistics, and fuzzy photos of kids looking anywhere but the camera. They are told that being Autistic is somehow worse than life threatening diseases- which, to be honest, is bad on multiple levels- I wonder what my one friend who is both Autistic and HIV+ thinks when the advertising compares one part of her life to another?

Recently I posted a video on tumblr that Rethinking Autism did called “Autism Support Group.” It had all the usual things we hear said about us- How it seems like we aren’t there, that we don’t display affection in typical ways, That we just “don’t get” school. Throughout, an Autistic adult responds to these comments, only to be ignored and unheard by parents. Thing is, these are comments we hear about ourselves, and about children who were like we were as kids, all the time. The comments could have been lifted from so many parent support groups around the nation- possibly around the world.

Another thing is that it’s always children that are mentioned. The majority of the leaflets and flyers that do feature Autistics (or models) instead of a puzzle piece feature children. “These children,” “Help a child,” or “1 in 100 children” is mentioned. Thing is, it’s NOT just children. There’s no follow through on the notation that Autism is a life-long thing, just a margin in the notes.

The exception is the speculation. “She will never get married and have kids.” “He will never hold a steady job.” “My kid will never go to college.” While these things might be true for some Autistics, saying it’s true of all of us- or rather, all the 1 in 100 or 110 or 160, whatever number you recognize- is just an outright lie and speculation. The same speculation that had my IEP team pressure my mom, saying “She’ll never go to college. She’ll probably never graduate high school. Stop filling her head with the idea that she should pursue advanced classes.” My mom pulled me out to put me in first cyber school then Christian school, and never bought into what they told her about me.

I eventually went back to public school, and I graduated high school in 2006. In 11th and 12th grades, I even took Advanced Placement English classes, and got a perfect score on the AP English exam. (They thankfully didn’t have a spelling section.) In fact, had I not had a nervous break down- inconveniently after the school had pulled my support services- my senior year, I would have been ranked and recognized as such at graduation.

This didn’t come to pass because of an obsession with curing me. It happened because my mother supported me unconditionally. (Her second and now ex husband is a different story for another time.) She knew I was anxious and distracted in school, and that they refused to let me pursue my potential. So she arranged it that I could, and in an environment that suited my changing needs. She encouraged me to get up in front of people and start advocating. She didn’t ever show me doubts about my being able to accomplish things.

A year or two ago, my mother was approached by a parent. The parent was talking about how “of course, you know, you grieve your kid when you find out they have special needs.” This made my mother angry. She responded that no, actually, she didn’t grieve me. I was right there. The extra work was stressful, that is undeniable, but she never lost me so there’s nothing to grieve. She has me, just the way I am- Autistic, Queer, and living with Chronic Pain.

My mother was there when I would melt down and flail wildly- sometimes so much so that she was worried at times about her own safety. She had to deal with people telling her that maybe she should put me in residential placement. She experienced the fear when as a small child I would wander off, one notable time in the Metropolitan Museum of Art in NYC. She heard the comments of “Why isn’t your daughter smiling?,” the “cheer up honey, it isn’t all that bad” and my response of “I’m happy, I don’t need to cheer up.”

Maybe she didn’t see what her second husband put me through, or notice the extra time I took in the bathroom, practicing facial expressions in the mirror so that the cheer ups would just stop. But she never stopped believing in me.

So, you know that Autism exists- but do you know what it means to be autistic?

Invisible Visible; Visible Invisible

I’m at the NYLN “Reap What You Sow” Institute right now. Being in a Disability space is so, so awesome and unbelievably energizing. The diversity here is INCREDIBLE. Too often, I attend or see conferences that ghettoize various aspects of or types of disability, or create a sense of separation between different types of disabilities.  Here, that sort of barrier is broken down- but it also makes me realize how much of a barrier we have out in the world in general.

One issue that struck me was visibility vs passing.

Sometimes, people’s disabilities are visible, but but obscures their person-hood and the fact that it is MORE than just their disability involved in their lives. When our disabilities are obvious, we become tokens, emblems in a logo (as some very wise women who can claim the concept said). We become the wheelchair user in the ADAPT logo, or the stereotype on our TV.

And while visibility is good, it is not helpful or useful- maybe not even good- if it denies our personhoods, our individuality. When we become a symbol rather than a person, a stereotype instead of an individual, and regardless of the other factors and aspects of identity we have our perceived identities wittled down to the most obvious factors of our lives.

Then there is Passing- when our disabilities are the sort that we can “look” normal. We pass as “normal” in a culture that oppresses us when we allow our true selves to show.

Before I go on, I want to bring in a little history (the geek in me insists) on the term “passing”. The most recognized form of passing is racial passing- there are many many stories out there of people who were of African American decent who- because of light skin or more European features- presented themselves as white. You can read some more about racial passing in an article at racematters.org.  There are other types of passing- Jews passing as Christians during the Inquisition and Holocaust,  queer people passing as straight, even people passing as a different political party. There’s a great article called “Privilege and Transphobia” that is very interesting, and has a lot of points that apply to lots of different types of passing.

(In case you need that simplified:) Passing means to take on the presentation of yourself as something you are not. Most times, people do this in order to avoid the oppressive factors in their communities.

I see this so, so much with those of us with invisible disabilities. We strive to achieve that old IEP goal of becoming “indistinguishable from [our]  peers”, to pretend “normalcy” in order to belong. We deny essential parts of ourselves in order to resemble ideals and stereotypes of our cultures. And society rewards us in various ways when we succeed- we get leadership roles, sit on committees, and are granted privilege. Even when we don’t quite pass, society grants us recognition by engaging us as their tokens, or by using us for Public Liaisons.

The privilege difference does create a conflict in our community.  Those who pass end up getting leadership positions and groupies (be they parents or peers), while those of us who don’t are still feared.

But the underlaying cause is the same, be we reviled or fetishized.  Those who revile us in our visible states don’t admire our relatively invisible ones- instead, they use us as a shield against their fear of the disabled.

I see a clear example at ASD or mental Health conferences a lot. A parent comes up to a presenter- or even me- and these words come out of their mouths: “Wow, you are such an inspiration/have endured so much!!!”

Now, I am no good at “getting” people in real time. I spend a long time processing it and building logical conclusions based on the info I have available, so it is totally possible that I have it wrong. But I believe that far too often, this is what they mean: “Wow, so I might not always feel revulsion when dealing with my son/if this happened to me, I might be able to pass or pretend it never happened!”

It might seem harsh. But if you say “her reasoning is that she just wants to hope her son gets better/be inspired” then you have to ask: why? Why is it so important to “get better”? Why do you find this inspiring? Too often, what I mentioned above seems to be the reason at the core.

I do not know what suggestions to make about this beyond the following:

If you are “invisible”, if you pass, take some time not to. Increase that time- be visible. don’t allow yourself to restrain who you are out of fear that someone will know that you are disabled. Don’t let people tell you that you must try to conform, that the only way you can go is to pass or to pursue indistinguishably. Work instead on what is important to you and your life and inde-and interdependence.

When Your Own Problems Take Over

I haven’t been updating this lately. Last time I did, it was to share charities in the wake of the Haiti Earthquake. There are some simple and not so simple reasons for this, so I shall summarize.

I had a back slide in my own issues. I’m a fairly proud individual, so admitting that is a big deal for me. Lots of personal issues emerged at once, and with little to no recovery time in between. The stress had me backsliding in a lot of areas. But that backsliding has allowed me to admit just how much help I do need.

Some of you will not be surprised to know that my executive functioning and daily living skills are not the best. This isn’t something I am entirely comfortable with- even though I know that they re linked to my disability, admitting that they are a problem  makes my pride twinge. I was, like many of us,  brought up in ableist environment. Asking for help was something that I have feared doing. And learning to do so- and to begin shedding my own ableism- takes a lot of work.

In April, I finally admitted to what people had been telling me for a long time. I wasn’t ready to live on my own. Since then, I have been preparing to move in with a family friend, who will be able to provide the type of supported housing that I need.

Many supported housing programs will house you with other individuals with certain types of disabilities, depending on your service system. I am familiar with my county’s system, and I was scared that I would be placed with someone with conflicting issues. In addition, they  tend more towards a group approach. It is hard to tell professionals that that is not what you need.

So I am moving in with Janet M. and her family. Janet used to take in hard to place foster kids- also known as those with special needs. She adopted her son Steven- my age, and non-verbal- when he was 10. He recently moved into a group home that supposedly is helping him. She has the background to know what she is dealing with. She also is renting a room to an elderly man with Schizophrenia, and he has shown improvement since moving in.

Here’s the positives involved with this new situation:

Janet is strict about keeping the house clean. There will be a chore chart. I will most likely be given the bath room cleaning and laundry (since that is what I asked for). The Chore chart is a weekly schedule, and one that she is strict about.

I will be required to wake up at a reasonable time, and to not spend the entire day in my room. She doesn’t mind if I am online, but I need to be somewhere where there is a chance for human interaction. I will also be expected to go into Franklin at least once a week. Eventually I hope to get up to more than once a week, but that is something I will have to work on- being scared of going out in public is an issue for me, particularly if I don’t have a distinct destination.

She will make sure I make it to all my appointments, learn to schedule things properly, and make sure she pushes me when I need it. Her tendency towards schedules and charts should help me- I function better on a schedule, even if I have a hard time establishing them on my own. We will also be working on independent living skills beyond that- learning how to drive, becoming more capable at using the phone, budgeting, etc.

I will still be paying for my own food and personal supplies. She is providing housing, utilities included, and guidance.  I will be asked to pay rent.

The whole thing is scary, but I have hit the point where on my own I am endangering my health and wellness. I have to admit to the need for change, even though it is terrifying. This isn’t the first time I’ve admitted I can’t live on my own- I had someone move in with me in Erie in part because of that- but it is harder this time.

Back, and I got published in the NYLN news letter!

Sorry I’ve been away- I’ve been sick for a week and a half with the H1N1 (Swine Flu) and I have so much I’d like to write about. Some of that requires it’s own post, though, so I’ll try to get to it in the next couple of posts. On the upside, I just mailed out the disability forms with the help of my grandmother’s Partner- I have a hard time filling out forms about myself. I can’t sort out what’s relevant or how much to write for a question, and get anxious that I’m not interpreting it right when I try to do them myself.

Tonight, I wanted to let you all know that I’ve had a short essay published in NYLN’s Fall Newsletter*! My essay is on page 12 as “Coming Out with Pride” and compares My process coming out as Bisexual to coming out as developmentally disabled in light of both National disability awareness and history month and National Coming Out day.

The version that was published was edited a bit, but you can also read my original essay here, on google docs (you don’t need to sign up or anything, it will just load).

I do recommend that you read some of the other articles in the Newsletter, though! The newsletter is Quarterly. THere are sevveral topics covered this time, including Tourette Syndrome, New newsletters like Riot (which I’ve just signed up for!), and an article on healthcare reform. There are also several articles on the importance of remembering our history and the accessibility that arose from the cross-disability movement.

*Let me know if you are having issues viewing the document- I had issues in my default word program but not in open office.

Goodness, a personal post? REALLY?(aka, father-daughter conflict)

[NOTE: I have removed some things from the Entry below after my father found this and expressed his discomfort with some of the way I took some things. I appologize.]

I am visiting my father this week. My biological father. A man who ideologically I have nothing in common with. A man who gave me a good portion of my genetics, for better or for worse.

Don’t get me wrong, I love my father, and his wife Rose. Their actions and ideology is suited to their position in their culture and among their peers. They care about me, even if their way of showing it irritates me, and my way of demonstrating affection towards them is not as they expect. (Apparently Rose was for years under the impression that I disliked her as I didn’t demonstrate affection in a way she expected- until my Dad reminded me when her birthday was and I sent her a picture of a muffin. She cried to know I cared, and I was shocked to know she didn’t know.)

My father is terribly of a conservative mind. Don’t get me wrong, he’s okay with homosexuality and he’s pro-decriminalization of Marijuana. But is personal ideology is inherently conservative. It is based on the idea that it is weak and wrong to rely on society or any one other than one’s self for anything- that in fact it is a foolish move to do anything that does not benefit yourself.

Under the umbrella of his ideology is a complete and utter rejection of the social model of disability. For those unfamiliar with the social model (and are too lazy to click the link),

“The social model of disability proposes that systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) are the ultimate factors defining who is disabled and who is not in a particular society.”

The first time I heard my father reject this thought was not in a disability context in particular. I was listening to music and mentioned that I loved the message of the song. His response was to ask if is was “one of those songs that blames society for problems” and that he thought that such a message was idiotic. It wasn’t, but then on I have heard him say further things in the past 7 or 8 years since.

In a more general sense, it’s rough for me. I’m a liberal, I suppose, though perhaps progressive is more acurate. While I recognize that there are a lot of parts of my ideal world that aren’t possible due to human nature, I still think it’s worth fighting for. And I am an advocate for “invisible” disabilities- many of whom are primarily disabled under the social rather than medical models.

While the individual has the responsibility to do what they can to get into a position that they are capable of and comfortable with, that does not exculpate society. And it doesn’t mean that conformity is ideal, particularly in a disability context. There are members of the disability community that would like to conform. For them, they have an entire system designed to suit that need. But that doesn’t mean that that is the only right answer, or that it is even a posibility for everyone desirable or not.

More particular to my situation of the moment has a more immediate effect that a worry about political issues and having to creep about when discussing work as though the topic is a mine field. My father does not accept Diagnosis. At all.

This has been a thing that has been consistent most of my life. My mother has always sought various services for me, even before she left my father. [content has been exized for privacy reasons.]

[Content about my father’s reaction to my sister’s TBI has been exized for privacy reasons.]

Fast forward to within the past 6 months. I was discussing a (now) ex-boyfriend and mentioned his OCD. My father went off about how OCD was made up to stigmatize people and several other things that I decline to repeat as they degraded into offensiveness.

I came out as on Spectrum last year. Most people I know know. My sister recently accepted it after a year of being convinced that you had to be non-verbal- She met some more people on spectrum and learned a few things. I’ve been living my life fairly openly- stimming in my own home and able to speak about what it is like publically.

I’m still not out to my father. I had him pick me up from Autreat last year, and I conveiniently left out that I was there as a person on spectrum. He knows I work with and advocate for us, but to tell him that I am a part of that us seems impossible.

While I have been up here, I have been unable to engage in activities that had become routine. I’m not talking about in public, I’m talking about around the house. I’m not allowed to be upset here by sudden changes in plans, and when I don’t respond as expected there are issues and a number of misunderstandings. And I can’t give a reason why.

It’s harder than coming out as bisexual was, by far.

A moment of Zen: The Imagine video.